scholarly journals Early experience with an opt-in research register - Scottish Health Research Register (SHARE): a multi-method evaluation of participant recruitment performance

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Wen Shi ◽  
Shobna Vasishta ◽  
Louise Dow ◽  
Daniella Cavellini ◽  
Colin Palmer ◽  
...  
Keyword(s):  
Health Research ◽  
Online Survey ◽  
Support Service ◽  
Target Number ◽  
Health Records ◽  
Participant Recruitment ◽  
Research Teams ◽  
Research Register ◽  
Health Care Encounters ◽  
Recruitment Performance

Abstract Background Recruiting participants to a clinical study is a resource-intensive process with a high failure rate. The Scottish Health Research Register (SHARE) provides recruitment support service which helps researchers recruit participants by searching patients’ Electronic Health Records (EHRs). The current study aims to evaluate the performance of SHARE in participant recruitment. Methods Recruitment projects eligible for evaluation were those that were conducted for clinical trials or observational studies and finished before 2020. For analysis of recruitment data, projects with incomplete data were excluded. For each project we calculated, from SHARE records, 1) the fraction of the participants recruited through SHARE as a percentage of the number requested by researchers (percentage fulfilled), 2) the percentage of the potential candidates provided by SHARE to researchers that were actually recruited (percentage provided and recruited), 3) the percentage of the participants recruited through SHARE of all the potentially eligible candidates identified by searching registrants’ EHRs (percentage identified and recruited). Research teams of the eligible projects were invited to participate in an anonymised online survey. Two metrics were derived from research teams’ responses, including a) the fraction of the recruited over the study target number of participants (percentage fulfilled), and b) the percentage of the participants recruited through SHARE among the candidates received from SHARE (percentage provided and recruited). Results Forty-four projects were eligible for inclusion. Recruitment data for 24 projects were available (20 excluded because of missingness or incompleteness). Survey invites were sent to all the eligible research teams and received 12 responses. Analysis of recruitment data shows the overall percentage fulfilled was 34.2% (interquartile 13.3–45.1%), the percentage provided and recruited 29.3% (interquartile 20.6–52.4%) and percentage identified and recruited 4.9% (interquartile 2.6–10.2%). Based on the data reported by researchers, percentage fulfilled was 31.7% (interquartile 5.8–59.6%) and percentage provided and recruited was 20.2% (interquartile 8.2–31.0%). Conclusions SHARE may be a valuable resource for recruiting participants for some clinical studies. Potential improvements are to expand the registrant base and to incorporate more data generated during patients’ different health care encounters into the candidate-searching step.

scholarly journals Early Experience with An Opt-In Research Register - Scottish Health Research Register (SHARE): A Multi-Method Evaluation of Participant Recruitment Performance.

2021 ◽  
Author(s):  
Wen Shi ◽  
Shobna Vasishta ◽  
Louise Dow ◽  
Daniella Cavellini ◽  
Colin Palmer ◽  
...  
Keyword(s):  
Health Research ◽  
Online Survey ◽  
Support Service ◽  
High Rate ◽  
Target Number ◽  
Participant Recruitment ◽  
Research Teams ◽  
Recruitment Methods ◽  
Research Register ◽  
Health Care Encounters

Abstract Background Recruiting participants to a clinical study is a resource-intensive process and has high rate of failure. The Scottish Health Research Register (SHARE) provides recruitment support service which helps researchers recruit participants by searching patients’ Electronic Health Records (EHRs). The current study aims to evaluate the performance of SHARE in participant recruitment. Methods Recruitment projects eligible for evaluation were those for clinical trials or observational studies and had finished before the end of 2019. From SHARE records, for each project we calculated 1) the fraction of the participants recruited through SHARE as a percentage of the number requested by researchers (percentage fulfilled), 2) the percentage of the potential candidates provided by SHARE to researchers that were actually recruited (percentage provided and recruited), 3) the percentage of the participants recruited through SHARE of all the potentially eligible candidates identified by searching registrants’ EHRs (percentage identified and recruited). Research teams of the eligible projects were invited to participate in an anonymised online survey. Two metrics were derived from research teams’ responses, including a) the fraction of the recruited over the study target number of participants (percentage fulfilled), and b) the percentage of the participants recruited through SHARE among the candidates received from SHARE (percentage provided and recruited). Results 44 projects were eligible for inclusion. Recruitment data for 24 projects were collected (20 excluded because of missingness or incompleteness). Survey invites were sent to all the eligible research teams and received 12 responses. Analysis of recruitment data shows the overall percentage fulfilled was 34.2% (interquartile 13.3% − 45.1%), the percentage provided and recruited 29.3% (interquartile 20.6% − 52.4%) and percentage identified and recruited 4.9% (interquartile 2.6% − 10.2%). Based on the data reported by researchers, percentage fulfilled was 31.7% (interquartile 5.8% − 59.6%) and percentage provided and recruited was 20.2% (interquartile 8.2% − 31.0%). Conclusions SHARE may be a valuable resource for recruiting participants for some clinical studies. Potential improvements are to expand the registrant base and to incorporate more data generated during patients’ different health care encounters into the candidate-searching step.

scholarly journals What makes a ‘successful’ collaborative research project between public health practitioners and academics? A mixed-methods review of funding applications submitted to a local intervention evaluation scheme

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Peter van der Graaf ◽  
Lindsay Blank ◽  
Eleanor Holding ◽  
Elizabeth Goyder
Keyword(s):  
Public Health ◽  
Health Research ◽  
Collaborative Research ◽  
Online Survey ◽  
Public Health Practice ◽  
Rapid Review ◽  
Success Rates ◽  
Evaluation Scheme ◽  
Health Practitioners ◽  
Public Health Practitioners

Abstract Background The national Public Health Practice Evaluation Scheme (PHPES) is a response-mode funded evaluation programme operated by the National Institute for Health Research School for Public Health Research (NIHR SPHR). The scheme enables public health professionals to work in partnership with SPHR researchers to conduct rigorous evaluations of their interventions. Our evaluation reviewed the learning from the first five years of PHPES (2013–2017) and how this was used to implement a revised scheme within the School. Methods We conducted a rapid review of applications and reports from 81 PHPES projects and sampled eight projects (including unfunded) to interview one researcher and one practitioner involved in each sampled project (n = 16) in order to identify factors that influence success of applications and effective delivery and dissemination of evaluations. Findings from the review and interviews were tested in an online survey with practitioners (applicants), researchers (principal investigators [PIs]) and PHPES panel members (n = 19) to explore the relative importance of these factors. Findings from the survey were synthesised and discussed for implications at a national workshop with wider stakeholders, including public members (n = 20). Results Strengths: PHPES provides much needed resources for evaluation which often are not available locally, and produces useful evidence to understand where a programme is not delivering, which can be used to formatively develop interventions. Weaknesses: Objectives of PHPES were too narrowly focused on (cost-)effectiveness of interventions, while practitioners also valued implementation studies and process evaluations. Opportunities: PHPES provided opportunities for novel/promising but less developed ideas. More funded time to develop a protocol and ensure feasibility of the intervention prior to application could increase intervention delivery success rates. Threats: There can be tensions between researchers and practitioners, for example, on the need to show the 'success’ of the intervention, on the use of existing research evidence, and the importance of generalisability of findings and of generating peer-reviewed publications. Conclusions The success of collaborative research projects between public health practitioners (PHP) and researchers can be improved by funders being mindful of tensions related to (1) the scope of collaborations, (2) local versus national impact, and (3) increasing inequalities in access to funding. Our study and comparisons with related funding schemes demonstrate how these tensions can be successfully resolved.

Considering the team in Research Teams: Enhancing the Quality of Health Research for Aging Canadians

2010 ◽  
Vol 29 (2) ◽  
pp. 281-286
Author(s):  
Sarah Jane Lusina ◽  
Nancy Langton ◽  
Joanie Sims-Gould ◽  
Karim M. Khan
Keyword(s):  
Health Research ◽  
Research Teams

scholarly journals Efficient identification of patients eligible for clinical studies using case-based reasoning on Scottish Health Research Register (SHARE).

2019 ◽  
Author(s):  
Wen Shi ◽  
Tom Kelsey ◽  
Frank Sullivan
Keyword(s):  
Health Research ◽  
Clinical Studies ◽  
Search Strategy ◽  
Database Search ◽  
Prediction Score ◽  
Free Text ◽  
Case Based Reasoning ◽  
Study Participation ◽  
Research Register ◽  
Case Based

Abstract Background: Trials often struggle to achieve their target sample size with only half doing so. Some researchers have turned to Electronic Health Records (EHRs), seeking a more efficient way of recruitment. The Scottish Health Research Register (SHARE) obtained patients’ consent for their EHRs to be used as a searching base from which researchers can find potential participants. However, due to the fact that EHR data is not complete, sufficient or accurate, a database search strategy may not generate the best case-finding result. The current study aims to evaluate the performance of a case-based reasoning method in identifying participants for population-based clinical studies recruiting through SHARE, and assess the difference between its resultant cohort and the original one deriving from searching EHRs.Methods: A case-based reasoning framework was applied to 119 participants in nine projects using two-fold cross-validation, with records from a further 86,292 individuals used for testing. A prediction score for study participation was derived from the diagnosis, procedure, pharmaceutical prescription, and laboratory test results attributes of each participant. Evaluation was conducted by calculating Area Under the ROC Curve and information retrieval metrics for the ranking list of the test set by prediction score. We compared the most likely participants as identified by searching a database to those ranked highest by our model. Results: The average ROCAUC for nine projects was 81% indicating strong predictive ability for these data. However, the derived ranking lists showed lower predictive performance, with only 21% of the persons ranked within top 50 positions being the same as identified by searching databases.Conclusions: Case-based reasoning is may be more effective than a database search strategy for participant identification for clinical studies using population EHRs. The lower performance of ranking lists derived from case-based reasoning means that patients identified as highly suitable for study participation may still not be recruited. This suggests that further study is needed into improvements in the collection and curation of population EHRs such as use of free text data to better define the characteristics of people more likely to be recruited.

Managing and Integrating Diverse Sources of Urban Data

2020 ◽  
pp. 181-196
Author(s):  
Gina S. Lovasi ◽  
Steve Melly
Keyword(s):  
Electronic Health Records ◽  
Data Management ◽  
Urban Health ◽  
Health Research ◽  
Health Records ◽  
Electronic Health ◽  
Urban Data

This chapter serves to highlight strategies and challenges in bringing together multiple types of geographically referenced data for urban health research, such as linkage of electronic health records to area-based characteristics. The discussion highlights practical considerations that arise in data management, as well as strategies safeguard confidentiality.

scholarly journals 2520

2017 ◽  
Vol 1 (S1) ◽  
pp. 82-82
Author(s):  
Meghan Spiroff ◽  
Lisa Connally ◽  
Anita Johnson ◽  
Aalap Doshi ◽  
Patricia Piechowski
Keyword(s):  
Clinical Trials ◽  
Best Practices ◽  
Health Research ◽  
Participant Recruitment ◽  
Gender And Age ◽  
Study Population ◽  
Gender And Age Differences ◽  
The University ◽  
Racial Ethnic ◽  
Research Studies

OBJECTIVES/SPECIFIC AIMS: Across the Clinical and Translational Science Award (CTSA) Consortium, participant recruitment into clinical trials is essential to advance science. Without proper participant recruitment, clinical trials do not result in gains in scientific knowledge, wastes time, funds, and other resources (Mahon et al., 2015). METHODS/STUDY POPULATION: Participant recruitment programs across the consortium are inconsistent in staffing, program services, and program goals. The participant recruitment program at the University of Michigan’s (U-M) Michigan Institute for Clinical & Health Research (MICHR) provides expertise, tools, and resources to facilitate participant recruitment in clinical and health research studies. RESULTS/ANTICIPATED RESULTS: We will explain our program infrastructure, staffing, services, and discuss how we maintain an engaged registry with over 27,000 participants interested in research studies at U-M. DISCUSSION/SIGNIFICANCE OF IMPACT: Proper recruitment into clinical trials results in findings that are relevant for genetic, cultural, linguistic, racial/ethnic, gender, and age differences (Cottler et al., 2013). We hope to share our best practices that aid in the development and success of participant recruitment across the CTSA Consortium.

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